Review of Evidence About Family Presence During Resuscitation

Review of Evidence About F a m i l y P re s e n c e D u r i n g Resuscitation Sonya A. Flanders, MSN, RN, ACNS-BC, CCRNa,*, Jessica H. Strasen, BSN, RN, CCRNb KEYWORDS  Family presence during resuscitation  Family-witnessed resuscitation  Family-centered care  Patient-centered care  Resuscitation KEY POINTS  Despite research documenting family presence during resuscitation (FPDR) is unlikely to cause psychological distress to families and may be helpful to them, the practice remains controversial in many settings.  Being present during a loved one’s resuscitation should be offered as an option to family, ideally in alignment with the patient’s wishes, and with a designated family support person.  Health care providers (HCPs) generally are less supportive of FPDR than patients and families, and levels of support vary by geographic region and culture.  Variations in practice regarding FPDR may lead to inequitable patient care. Patients, families, and HCPs deserve to receive and give evidence-based care related to FPDR.  HCP education about FPDR, policies or guidelines, and experience with FPDR tend to increase HCP support for the practice.

INTRODUCTION

A desirable attribute of nursing practice is to provide patient care based on evidence. Sometimes personal attitudes, opinions, traditions, and beliefs also influence nursing decisions and actions, as does the context of the practice environment. Care of the dying patient and his or her family is a complex, emotionally charged situation susceptible to personal attitudes of nurses and other health care providers (HCPs). Patients nearing the end of life require skilled nursing care at all times, but perhaps more so when death is unexpected and resuscitation is attempted.

Disclosure Statement: The authors have no significant relationships to disclose. a Center for Learning Innovation and Practice, Baylor Scott & White Health, 2001 Bryan Street, Suite 600, Dallas, North Texas 75201, USA; b 4 Truett Medical ICU, Baylor University Medical Center at Dallas, 3500 Gaston Avenue, Dallas, TX 75246, USA * Corresponding author. E-mail address: [email protected] Crit Care Nurs Clin N Am 26 (2014) 533–550 http://dx.doi.org/10.1016/j.ccell.2014.08.010 ccnursing.theclinics.com 0899-5885/14/$ – see front matter Ó 2014 Elsevier Inc. All rights reserved.

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To guide nurses and interdisciplinary colleagues, medical aspects of care during resuscitation are outlined in evidence-based basic and advanced cardiac life support (ACLS) guidelines.1,2 Resuscitation guidelines facilitate shared expectations and collaborative workflow among members of health care teams. Technical aspects of resuscitation such as cardiopulmonary resuscitation (CPR), advanced airway management, electrical therapies, and medication administration have been widely adopted and generally agreed upon. Resuscitation activities may also involve ethical considerations, including whether to allow family presence (FP) at resuscitation, an issue about which resuscitation team members may disagree. Although several organizations3–7 support offering the option of family presence during resuscitation (FPDR), implementation remains controversial. The problem is controversy leads to practice variation, so some families are offered this option while others are not. Inconsistent practice opens the door for inequitable patient care, and also poses a risk to the health care team as inconsistencies may lead to confusion, tension, or overt conflict between HCPs. Given the potential consequences, nurses and others may benefit from examining what is known about FPDR, including factors that hinder and help effective implementation, so as to best care for patients, families, and one another. This article presents relevant research on attitudes about FPDR, interventions to help change practice, and the authors’ experience with a project to implement FPDR in a medical intensive care unit (MICU). This knowledge can be used to empower nurses to transfer evidence into practice. BACKGROUND

FPDR remains a popular topic in contemporary health care literature. FPDR means family members are offered the option to witness any portion of resuscitation efforts on their loved one. Presence may range from allowing family members to touch or speak to the patient to having them passively observe without patient interaction. Offering FPDR as an option means the choice is offered devoid of coercive behavior intended to promote or discourage a specific decision. The optional aspect is important because FPDR may not be desirable for everyone. The term family, historically defined as one’s legal relatives, has expanded. Besides legal relatives, the Joint Commission’s definition includes friends or others who provide support to the patient as family.8 Similarly, the American Association of Critical Care Nurses (AACN) defines family as including relatives and significant others who have an established relationship with the patient.4 Clarifying who is considered family should be part of dialogue about FPDR to minimize misunderstandings. The first article addressing FPDR was published more than 25 years ago, when researchers found most families wished to be present during resuscitation, and most staff surveyed endorsed FPDR.9 Although there was a paucity of research over the following decade, interest in FPDR later resurfaced. Today there is a substantial body of literature surrounding the practice. REVIEW OF EVIDENCE ABOUT FAMILY PRESENCE DURING RESUSCITATION

Available evidence can add objectivity to the creation of well-informed practice recommendations. The literature contains reports about HCP, patient, and public attitudes about and experiences with FPDR, offering viewpoints from key stakeholder groups. In addition, effects of various interventions used to change practice have been explored. Research findings about attitudes and experiences can guide planning and implementation of FPDR, and help to promote buy-in of interprofessional staff and organizational leaders.

Family Presence During Resuscitation

The Origins of Research

The landmark study about FPDR continues to be cited in contemporary literature, and some issues addressed then remain controversial today. Researchers were inspired to learn more about having families attend resuscitation events after a chaplainadministered survey revealed 72% of family members wished they had been present during resuscitation efforts.9 As a result, they conducted a program in one Michigan hospital’s emergency department (ED), allowing selected family members to attend resuscitations, then surveyed families and staff. Results indicated most family members would want to attend a family member’s resuscitation again, approximately one-third considered it their right, and the majority believed it aided their grieving and was beneficial to their dying family member. Of staff respondents, 81% had been with family in the resuscitation room and 30% thought anxiety had hampered their activities, but 71% still endorsed FPDR. Researchers concluded there were no data to support denying FPDR, found no difference in resuscitation attempts whether family was present or not, and indicated that no families had interfered with resuscitation. Having a supportive, dedicated staff member such as a chaplain or nurse to assist the family was noted as a crucial requirement for the success of an FPDR program.9 This study provided new insight into FPDR and challenged opposing arguments, offering a foundation for additional research into an unexplored practice. An anecdotal report from the same hospital described how, after 9 years of allowing FPDR, there had been no instances of interference with resuscitation efforts.10 The investigators said, “with 9 years of experience in facilitating acceptance of death and grieving by this method, it is hard for us to understand that this practice is seldom considered.”10(p106) Nonetheless, FPDR remains controversial. Health Care Provider Attitudes About Family Presence

Further research has examined FPDR from the viewpoints of HCPs (Box 1 provides a summary). Some research has revealed divided opinions between health care disciplines. For example, investigators gathered opinions from members of the Emergency Nurses Association (ENA) and the American Association for the Surgery of Trauma (AAST) about FP during trauma resuscitation after nurses in one trauma center attempted to implement a policy supporting FPDR.11 Group opinions differed significantly about which procedures family should be permitted to observe, with ENA members voicing greater support than the physicians. Nurses believed family had a right to be present, and would rather be present themselves if their family member needed resuscitating. By contrast, AAST members thought FP would interfere with resuscitation, increase providers’ stress levels, and raise litigation risk. Researchers expressed concerns about patient confidentiality and safety of trauma team members from potentially violent family members, concluding a policy allowing FPDR would create disharmony between team members.11 Another survey was conducted with a sample predominantly comprised of physicians, with a smaller number of nurses and other allied health professionals.12 Most respondents did not support FPDR, although nurses again were more likely to support FPDR than others. Levels of support varied regionally across the United States, with Midwesterners more likely to endorse FPDR. Reasons for disapproval included worries of psychological trauma to family, medicolegal concerns, HCP performance anxiety, and fear of family distracting the resuscitation team.12 In a study seeking only nurses’ opinions, acute care nurses and ENA members in New Jersey were queried about attitudes regarding FPDR and invasive procedures (IP).13 The survey was completed by 193 registered nurses (RNs) and 15 licensed

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Box 1 Perceptions of health care providers (HCPs) about FPDR Concerns Concerns affecting patients and families  Psychological distress to family  Organizational culture may conflict with patient/family culture  Compromised patient confidentiality  Interference with patient resuscitation  Inadequate space for family  Risk of injury to family  May cause prolonged resuscitation  Family may be upset by things said by resuscitation team  Family may misinterpret activities during resuscitation Concerns affecting the health care team  Create discord between HCPs  Medicolegal risk  Distracting to resuscitation team  Risk to safety of resuscitation team  Need to abide by legal and forensic rules  Increased staff needed for FPDR and may increase costs  Stress for staff related to be observed  Interference with teaching of residents Benefits  Improves communication between staff and family  Staff could explain resuscitation to family  Facilitates family’s acceptance of death  Provides family a sense of control  Facilitates family’s grieving process  Relatives could see everything possible was done  Family could help decide when to terminate resuscitation efforts  Enhanced personhood of the patient  Family help the patient Data from Refs.11–13,15–17,21–32

practical nurses (LPNs). Although 58% indicated that FPDR interfered with job performance, 56% would want to attend resuscitation of their own family member, and most would want family present if they were the patient. Several themes emerged, including FPDR being a method to enhance staff and family communication, background of family members should determine permission to attend, and personal limitations of a nurse could be a barrier to FPDR. One obstacle identified was conflict between organizational and client/family culture, which could minimize the ability to accommodate

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individual beliefs. Comparatively, nurses with higher levels of nursing education and certified emergency nurses were more positive about FPDR.13 By contrast, a later study found no link between nurse education and support of FPDR.14 Instead, investigators found a positive correlation between spirituality of nurses, physicians, and physician assistants (PAs) and support for FPDR, and found older HCPs tended to be less supportive of FPDR.14 Other researchers elucidated acute care nurses’ beliefs about FPDR using interviews.15 Analysis resulted in identification of 4 themes: conditions for FPDR, use of FPDR to force decision-making by family, staff’s sense of being watched, and impact of FPDR on family. Diversity of responses led researchers to suggest an FP policy would reduce the influence of individual staff opinions, noting each resuscitation has variables to support or preclude the offer of FP.15 Research comparing perspectives of urban and suburban ED hospital personnel was conducted through a survey of physicians, nurses, PAs, and support staff in 4 Michigan hospitals.16 Urbanites were less likely to support FPDR than HCPs in suburban settings. Opinions matched those relayed in other research, including concerns about distraction of HCPs, harmful psychological impact to family, problems of inadequate space, and fear of litigation.16 Elsewhere, a phenomenological approach was used to explore perceptions of acute care nurses who had experience with FPDR.17 Four previously undescribed themes surfaced: the nurse forging a connection with family, engagement of family in care of the patient, nurses’ transition to accept FPDR or IP, and the need for a cautious approach to FP. The experience could be exceptionally positive for the nurse, but some were ambivalent or held strong reservations about FP. The need to abide by legal and forensic rules in potential crimes was a barrier to allowing FP in certain cases.17 In 2008, a team of nurse researchers published 2 instruments related to FPDR: one to measure perceptions about risks and benefits to families, called the Family Presence Risk-Benefit Scale (FPR-BS), and another to measure self-confidence managing FPDR situations, called the Family Presence Self-Confidence Scale (FPS-CS).18 The instruments were used initially in a study involving 375 RNs and LPNs. Survey scores were broadly distributed, reflecting divergent perspectives. Subjects who thought FPDR had more benefits and fewer risks indicated higher self-confidence managing FPDR. Nurses who belonged to professional organizations and those holding professional certifications had more positive scores on both scales, and ED nurses were more positive than nurses in other settings. Nurses with experience inviting FPDR perceived more benefits than risks and were more self-confident than those who did not.18 This research introduced reliable, standardized instruments since used in other studies.19,20 Recently, the instruments were used to explore how different intensive care unit (ICU) environments affect nurses’ perceptions of FPDR and IPs.19 Nurses from the MICU and pediatric ICU (PICU) scored their confidence with managing FPDR situations and risk/benefit to the patient, family, and HCP higher than their counterparts in other ICUs, revealing differences between settings. Eighty-six percent of MICU nurses and 77% of PICU nurses had invited family to be present during resuscitation, whereas only 66% of surgical ICU nurses and 46% of nurses from other ICUs had done so.19 These results reflect the importance of understanding baseline attitudes of staff about FPDR in unique clinical areas, because implementation tactics may depend on preexisting factors at the unit level. International Health Care Provider Perspectives of Family Presence

HCPs, patients, and families in many countries may hail from diverse cultural backgrounds, bringing an international array of attitudes to the bedside. Because health

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practices have cultural variability, international studies offer insight into cultural aspects of FPDR. In early FPDR research from Australia, investigators assessed ED staff members’ attitudes about FPDR.21 When asked if family should be invited to resuscitations, 62% would consider FPDR under controlled, predetermined circumstances, 14% indicated family should always be given the option, and 11% thought family should never be invited. Many (70%) favored the opportunity to attend their own relative’s resuscitation.21 This aspect illuminated a trend identified in other surveys11,13: HCPs themselves would like to receive the option of FPDR more often than those same HCPs support offering the option to patients’ family members. Principal concerns were that the family may be disruptive or interfere, be offended by procedures or staff, or increase staff’s emotional stress. Researchers concluded guidelines could help address the staff’s apprehension.21 An Asian perspective was presented by examining attitudes held by ED staff in Singapore’s largest hospital.22 This study yielded some unique findings: only 14% of physicians and 3% of nurses thought relatives should be present during resuscitation, with no significant difference between professions. This finding departed from a pattern in other studies in which nurses were more supportive than physicians of FPDR.11,12,21,23–26 Despite low HCP support for FPDR, approximately one-third of physicians and one-fourth of nurses indicated relatives had requested FPDR within the prior 6 months.22 Of those who had experienced FPDR, 64.3% of physicians and 82.4% of nurses expressed discomfort with the situation. When asked to rate how relatives reacted to resuscitation, most selected descriptors were shock and disgust.22 A study from Pakistan also revealed extremely low levels of HCP support, with 0% of physicians and 15% of nurses supporting FPDR.27 Nurse support has been low in other studies. In an investigation involving Turkish ICU nurses, 91.1% did not wish family to be present during CPR, and 88.9% thought doctors did not want family present.28 Of 30 nurses who had experienced FPDR; two-thirds thought the experience had been negative. The researchers suggested education and guidelines may be helpful in enhancing experiences and practices.28 Similarly, in an exploratory study of German ICU nurses’ attitudes, more than twothirds of respondents expressed disagreement with offering family the option to be present during resuscitation.29 Of nurses who had been involved in FPDR, 65.7% indicated the experience was negative. Some subjects recounted instances of threats and physical violence toward the resuscitation team by family. Such experiences may cause reluctance to support FPDR. Despite negative experiences, some views were akin to those from other studies: FPDR should be individualized and situational; ideally, patient preferences should be gathered in advance; the need to support families; and family involvement in deciding when to terminate resuscitation.29 An exploration of European ICU nurses’ attitudes revealed nurses in the United Kingdom tended to support FPDR more than their continental European counterparts.30 Themes were similar to those found in United States research, including concerns about confidentiality and worries of families being upset by things said by the resuscitation team. Respondents mentioned having dedicated staff for family, but indicated staffing levels and space did not promote this. Most agreed family permitted to witness resuscitation would know all possible was being done, and 57.3% believed family should be allowed with the patient during the last moments of life. The investigators pointed out several factors that may have contributed to the array of responses, citing lack of experience, lack of solid evidence, traditions of paternalism, or practices of certain cultures.30

Family Presence During Resuscitation

In a different cultural milieu, researchers sought the attitudes of nurses and physicians in Iranian hospitals, where FPDR generally is not practiced and the community is predominantly Muslim.31 There, 77% of respondents opposed FPDR. ED physicians were more positive than nurses, general internists, and anesthesiologists. As identified elsewhere, the top concern about FPDR was psychological trauma for family. A unique recommendation was to provide public education about the possible benefits of FPDR.31 Voices of Patients and Families

HCPs have raised concerns about the impact on family from witnessing resuscitation of a loved one.12,15–17,22,24,31 Logically, investigations of family members’ responses to FPDR are necessary to assess the accuracy of HCPs’ concerns. Fortunately, several studies have looked to family members, patients, and the public to gather perceptions, experiences, and beliefs. Studies of health care provider, family, and patient views about family presence

Some investigators sought patient perspectives concomitantly with those of HCPs and families. For instance, attitudes about FPDR from family members who had witnessed IPs and resuscitation interventions, along with those of nurses and physicians, were explored following implementation of an FP guideline.23 Of HCPs, nurses were most supportive of and comfortable with FP, followed closely by attending physicians. Residents lagged behind in terms of support and comfort, a trend also identified elsewhere.23,25,26 Many positive effects were noted by family, negating staff concerns.23 Staff, too, noted positive effects, including ensuring families knew everything possible had been done, staff being able to educate families, families being helpful to clinicians and the patient, and an enhanced sense of personhood of the patient. Concerns from staff included fear that prolonged resuscitation would occur, leading to worry about cost-benefit issues from increased staffing needs and treatment efforts.23 A study from the United Kingdom sought perspectives of HCPs along with those of patients with paired next of kin.32 Most HCPs supported giving relatives the option of FPDR; support rose if the relative requested FPDR and was accompanied by trained staff. Half ranked the ability to explain resuscitation as the primary reason to allow FPDR and thought the greatest advantage was for relatives to see everything done for their family member. The principal reason for opposing FPDR was distress for family, an intriguing response because a significant number of these HCPs had participated in FPDR in an unstructured situation and, of those, most believed relatives had benefited and did not compromise the patient. Thoughts from patients and family members differed. Only 29% of patients desired FPDR, whereas 47% of relatives wished to attend. The main reason patients and relatives gave for FPDR was to provide support. Patients and families not wanting FPDR were concerned about family distress. Most thought their wishes should be documented, indicating they valued autonomy. The researchers proposed patients’ wishes about FPDR should be honored if known.32 In another study capturing views of HCPs, patients, and family members, HCP respondents included 98 physicians, 98 nurses, and 6 respiratory therapists (RTs).24 Overall, 54% of HCPs supported FPDR and IPs, and approximately two-thirds thought a policy was necessary. One HCP recommendation was to handle FPDR on a caseby-case basis depending on patient and family characteristics. Of family and patients surveyed, 31% and 29% had participated in FPDR or IPs, respectively. Family members who had experienced FP held more positive perspectives about being present, considered FP to be their right, wanted the option, and believed it was helpful to

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the patient. Almost all would participate in FP again. Patients echoed messages of family members: FP was their right, it would be comforting, and they should have the option.24 Family perspectives about family presence

Early research querying family members about FPDR came from the United Kingdom.33 Thirty-five bereaved family members responded to a questionnaire inquiring whether they would have wished to be present in the ED during resuscitation efforts, and were asked to describe what they believed happens during resuscitation. Sixty-nine percent indicated they would have liked the option of FPDR, and 62% of those would have chosen to witness resuscitation. This finding illuminated the value they placed on being offered the option, even if they did not wish to attend. Beliefs about what happens during resuscitation ranged from somewhat accurate to nonsensical. The investigators concluded allowing families into the resuscitation may have benefits, as what they imagined might be worse than what really occurred, assurance may be provided that everything possible was being done.33 In the United States, researchers conducted a telephone survey of desires, beliefs, and concerns about FPDR with 25 family members of patients who had died in the ED of a large urban trauma center.34 The majority thought FPDR should be offered, may have helped the patient, and would have helped their own grieving.34 A study from another hospital in the United States described experiences of family members of patients who had survived CPR.35 The major theme was family trying to decide whether to stay with the patient. Families wanted to know what was happening, and trusted HCPs to do their jobs caring for the patient. The investigators suggested that FPDR might meet families’ needs for proximity to patients and information about patients’ conditions.35 Family perspectives varied when investigators in Sweden explored family members’ experiences and views about FPDR during a relative’s resuscitation.36 Resultant themes involved fear of disturbing resuscitation, whether the patient would desire their presence, what interviewees would want for themselves in such circumstances, whether family could cope, and whether FPDR added value. Most had neither attended nor been invited to the resuscitation, which they interpreted to mean that HCPs were against FPDR. A key point was the concept of FPDR as an option, allowing family the choice to decline or accept. The option is important because, as in an earlier study,33 some people reported they definitely wanted to be there, whereas others definitely did not.36 Family preference for the option of FPDR also was found by investigators in Singapore after interviewing relatives of ED patients.37 Family members were much more supportive of FPDR than medical staff in the same hospital had been in a prior study,22 with 73.1% in favor compared with only 10.6% of the medical staff.37 Subjects perceived FPDR would facilitate grieving, provide assurance everything possible had been done to save the patient, and create stronger bonds between family and medical staff. Relatives were less likely than medical staff to think FPDR would be traumatic for them or that their presence would cause stress to the resuscitation team.37 The same mismatch was found in a study of predominantly Muslim bereaved family members in Pakistan.27 HCPs were against FPDR, but 94% of family members indicated they wanted to be present during CPR and were not worried about what they would hear or see.27 The first randomized controlled trial (RCT) of FPDR examined psychological effects of witnessing resuscitation on relatives.38 Relatives of ED patients were randomized to the experimental group, to whom the offer to attend resuscitation was made, or the

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control group, to whom no offer was made. A staff support person was present for all participants. Researchers halted the study early because of concerns that staff, who had concluded FPDR was beneficial, might threaten the experimental design. Despite study limitations, the results were interesting. Groups showed no differences in levels of distress. The experimental group showed a trend toward lower levels of grief symptoms, intrusive imagery, and posttraumatic avoidance than the control group. The researchers concluded beliefs FPDR would be psychologically harmful to family were unfounded. Three patients who survived resuscitation were asked about their comfort having family present; all felt supported and unconcerned with compromised dignity or confidentiality.38 Other investigators have explored the effect of FPDR on family members’ depression and symptoms of posttraumatic stress disorder (PTSD). Comparing postbereavement depression and PTSD scores of family members who had witnessed resuscitation with those who had not, no significant differences in outcomes were found.39 Recently published results from a multicenter RCT focused on the effect of FPDR on PTSD symptoms in family, impact on medical efforts, well-being of HCPs, and medicolegal proceedings further support the benefits of FPDR and counter concerns of negative effects on the medical team.40 Relatives in the intervention group were extended the option of attending resuscitation of their family member in the home; relatives in the control group were not. Subjects were interviewed 90 days after resuscitation. PTSD-related symptoms were significantly higher for those who had not witnessed resuscitation, as was incidence of anxiety. Those who had witnessed resuscitation had fewer symptoms of depression. Fewer than 1% of family members had conflict with the medical team or showed aggression. Twelve percent of those who had not witnessed CPR regretted not being there, whereas just 3% of those who had witnessed CPR expressed regrets of being present. FPDR had no impact on stress levels of medical teams, and there were no medicolegal conflicts.40 Patient perspectives

Patient preference is another aspect of FPDR. In one study exploring whether patients would want FPDR, most patients expressed a desire to have a family member present, although choice of family member varied.41 Variation surfaced in another study when adults in an ED waiting room were asked if they would wish to attend a loved one’s resuscitation, have a loved one attend their own resuscitation, or have a loved one attend their own resuscitation if that person wished to be present.42 Regarding relatives attending their own resuscitation, the preference for a spouse to be present leaned toward the positive. For questions about most other relatives attending, responses hovered between uncertain and probably present. The majority tended not to want a minor child present. If a loved one wished to be present, responses for allowing FPDR were more favorable. Subjects were more likely to want to attend a relative’s resuscitation than have a relative attend their own.42 Other research about patient views was conducted in 4 large hospitals in the United Kingdom.43 Preferences about FPDR were collected from 61 adults, 21 of whom had been resuscitated. Overall, patients supported offering family the option and thought that family could provide support and advocate for the patient. Subjects indicated being present could provide family with acceptance of death, but some thought there may be times HCPs should use discretion if exposing family to unpleasant activities. Patients were not concerned about confidentiality, although sensitivity by HCPs discussing health information was desired, and a minority did not wish FPDR.43

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Public perspectives

To gather public opinions outside of a health care setting, 408 adults in Pennsylvania were interviewed via telephone.44 Compared with other surveys, respondents were more divisive about whether family members or friends should be allowed to witness resuscitation, with 49.3% agreeing or strongly agreeing, 22.4% being neutral, and 29.7% disagreeing or strongly disagreeing. Subjects also were asked if they would want to be present during a loved one’s resuscitation, if they would want family or friends present during their own resuscitation, if FPDR would benefit the patient, and if it would benefit family and friends. Persons who would desire CPR themselves, those younger than 26 or older than 65 years, and those who were married, widowed, or never married expressed more positive responses toward FPDR. This study reiterated that many people want the option to be present or have loved ones present during resuscitation.44 Box 2 summarizes the opinions of patients, families, and the public. INTERVENTIONS TO INFLUENCE HEALTH CARE PROVIDER ATTITUDES ABOUT FAMILY PRESENCE

Alongside uncovering HCP perspectives about FPDR, knowing how various factors influence attitudes can guide or change strategies. Several approaches have been tested, including education, policies, and practice guidelines.

Box 2 Thoughts about FPDR from family members, patients, and the public Benefits  It is a patient/family right  Aids families’ grieving  Beneficial to patient; provides support and advocacy  Less grief, intrusive imagery, and posttraumatic grief symptoms  Families would know what was happening  Family could be near the patient  Questions could be answered  Family would know all possible had been done  Experience would strengthen bonds between medical team and family Concerns  Family distress from experience  Family fear of disturbing resuscitation General comments  Patient preference to have family attend may vary by relationship to patient  Would family add value to the resuscitation?  Would patient want family present?  HCPs should use discretion if exposing family to unpleasant activities and be sensitive when discussing health matters Data from Refs.9,17,23,24,27,32,34–38,40,41,43,44

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Education

One study examined whether a class about FPDR as a sole intervention could influence nurses’ beliefs.45 After attending class, nurses expressed greater support for offering the option. Nearly 80% indicated they planned to offer FPDR, compared with just 10.9% before the class.45 Effects of education with additional interventions have also been explored. For instance, investigators surveyed ED nurses and physicians in a large urban hospital to assess changes in attitudes, behaviors, and values related to FPDR following education and guideline implementation.26 After initial data collection, formal FPDR education was provided for nurses, whereas physicians received education during staff meetings. A guideline was developed, and offering FPDR began. Over time, FPDR was offered more frequently, often initiated by nurses who informed physicians about the practice. Remeasurement 1 year after implementation revealed 39% of nurses reported a more positive attitude about FPDR following education, with 36% expressing a more positive view after the FPDR program began, indicating both interventions may have helped shift nurse attitudes. Overall physician responses on the postintervention survey were, interestingly, less favorable toward FPDR and indicated more concerns about effects on resident education and legal issues, although caution was recommended in interpreting these results because of the small sample of physician respondents. The role of nurses as patient and family advocates in discussing benefits of FPDR with physician colleagues and the importance of reinforcing practice through ongoing education and dialogue were emphasized.26 Along similar lines, recent research measured the impact of HCP education about FPDR coupled with development of a unit-based guideline.20 Postintervention data revealed more positive perceptions of FP risk-benefit, and more family members were invited to attend resuscitations, even though subjects did not rate themselves significantly more confident with FPDR. The proportion of HCPs who would want their own FPDR shifted from 39% to 58.5%. More than half (59%) thought FPDR should be the patient’s decision, and 76% indicated this should be specified in an advance directive.20 Guidelines and Policies

Research suggests some HCPs favor policies or guidelines about FPDR.21,24,25,30 Others have opposed such policies.11 Still others have proposed that policies may not be necessary.14 Key nursing organizations have addressed this topic, including the AACN, which advises having written policies, and ENA, which indicates a policy may aid in providing structure and support for HCPs.4,6 How many organizations have formal policies or guidelines about FPDR is unknown at present, but has been assessed previously. More than a decade ago, published survey findings described policies, practices, and preferences of ICU and ED nurses related to FPDR and IPs.46 Results reflected input from 984 RNs in the United States. Although only 5% of units had policies on FPDR, approximately half allowed FPDR in certain circumstances. More than one-third of respondents conveyed preference for written FPDR policies while slightly more did not favor policies. Even without policies, many nurses had taken family to the bedside during IPs or resuscitation, or would do so in the future.46 Subsequent research indicates policies are valued by HCPs. An interdisciplinary group harvested opinions of pediatric ED staff related to FPDR and IPs.47 Overall, staff supported FPDR and IPs and desired an FP policy. Nurses were most supportive, followed by tenured medical staff. More novice resident physicians were less supportive of a policy.47 The next year, after implementing FP, a second study at the same

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hospital evaluated how effectively the FP protocol facilitated uninterrupted care.25 No instances of family interference with care occurred. Parents were overwhelmingly positive about the experience of FPDR, as were most HCPs. Nurses (92%) were more supportive of FPDR than attending physicians (78%). Only 35% of residents were supportive. Most HCPs believed FPDR was conditional on agreement of the physician in charge in addition to behavior and state of the parents, had no negative impact on patient care, and changed interpersonal dynamics of the health care team to a more professional communication level. A minority expressed concern that providing patient care was more difficult.25 Contemporary evidence suggests an FP protocol positively influences nurses’ perceptions of benefits to family and increases nurses’ confidence in their own contribution to resuscitation.48 Nurses from an urban ED in which an FP protocol had been in place for more than 25 years held favorable views toward FPDR, and indicated other team members did also. FPDR occurred commonly, and no events were reported in which family experienced harm or took legal action. It was suggested long-term engagement in FPDR promotes acceptance by nurses and acceptance may be learned through modeling rather than a protocol.48 These conclusions add strength to having a protocol, but emphasize the role of practicing FPDR in shaping nurses’ perceptions. The Impact of Experience

The aforementioned study and others show that experience with FPDR may contribute to positive HCP attitudes.18,26,48 Research conducted in the pediatric realm revealed that nurses and attending physicians who had experienced FPDR were significantly more supportive than those without such experience.49 Likewise, Duran and colleagues24 found that HCPs who had been involved in FPDR held significantly more positive views than those who had not. In another study, physicians with more experience in practice and nurses with more experience with CPR, more experience with FPDR, and those who had received education about FPDR were more supportive of FPDR.50 Further research may be helpful in ascertaining which interventions are most likely to enhance positive HCP attitudes about FPDR, and nurses interested in implementing the practice should consider what will work best in the context of their own professional environments. THE AUTHORS’ EXPERIENCE WITH FAMILY PRESENCE DURING RESUSCITATION

In 2011, a project to change practice around FPDR was initiated in the 24-bed MICU of a large, urban, tertiary-care, academic medical center. At the time there was no standard of practice in the hospital or in the MICU allowing FPDR, and it occurred very rarely. The project began with a survey administered to MICU nurses and hospital chaplains to gather baseline attitudes and beliefs toward the subject. Assessing staff members’ knowledge and comfort with FP, patient-/family-centered care, and aspects regarding psycho-social-spiritual support is valuable when beginning an FP initiative.51 Chaplains were included because a chaplain attends every resuscitation attempt, often to support and communicate with family members; therefore, involving and educating chaplains about the practice change was important for success. Although physicians were not surveyed, the MICU medical director and other key critical care physicians were informed about project plans and support moving forward. One presurvey question asked respondents to share personal concerns regarding FP. Some individuals were very concerned about implementing FP, with several

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remarks parallel to those found in the literature. One person wrote “please don’t implement this” on the survey. Although nurses and chaplains voiced apprehension, comments supporting the implementation of FP were also offered. Specific staff responses are listed in Box 3. Survey feedback was used to help develop content and plan staff education by ensuring issues raised by staff could be addressed with evidence-based information. A review of current literature about FPDR was used to formulate education materials, including a pamphlet summarizing reasons family members desire to be present, staff fears about FP, and facts about FP. A PowerPoint presentation available on the AACN Web site was also used for education.52 Education was provided face-to-face by the nurse leading the project. Following education, staff completed a 2-question survey: (1) List 2 benefits of FPDR you learned about; and (2) What was the most valuable part of the presentation? Answers to the first question included: FPDR helps bring closure for family; families see everything was done; it reduces fears; there is no evidence of problems with FPDR; and it allows families to share last moments with loved ones. Responses to the second question included: learning how beneficial FP can be with no negative outcomes; knowing most families would like the option to be present; learning research had been done was a motivator to implement evidence-based practice around FPDR; and education dispelled myths. After this, attitudes of staff toward FP shifted toward a more inclusive practice. It was no longer their first instinct to ask family to leave if resuscitation became necessary. Not long after FP education occurred, a hospital policy promoting patient and family-centered care was implemented, permitting patients and families to be together in the MICU most of the time. This concomitant change from more restricted visitation helped advance staff acceptance of FP during patient

Box 3 Baseline feedback from MICU nurses and hospital chaplains about FPDR Benefits  “Especially during CPR family should be offered the chance to be in the room. It is the most important policy we could have”  “It could be beneficial to humanize the patient for the team, comfort for the patient when conscious, understanding of CPR for the family, and sense of helping by being present”  “Family can have a more realistic view of what their sick family member has to endure during CPR” Concerns  Fear of making a mistake  “This is a violent event and perhaps not suited for all”  Potential distractions/interference by emotional outbursts, misconception/misunderstanding of code team humor, potential effects of family exposure to the trauma of CPR, intubation, and so forth”  “I do not want distraction. The patient and their safety have got to be the primary focus”  “May create anxiety and increase pressure/stress to the medical team, especially when it’s a team of medical residents who are building up their skills” General comments  “Depends on the situation, it could show family we did all we could do and help with their coping”

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care activities, including resuscitation. A case study describing an FPDR experience is presented in Box 4. FPDR is now strongly supported in the MICU. During resuscitation events nurses ask, “Is there any family? Do we need to get them?” Expected practice is to bring family to the bedside as quickly as possible if they are not already in the room. One nurse, who initially adamantly opposed FPDR, became a supporter after witnessing the benefit it had on her patient’s family and their ability to cope. Newly hired nurses learn about FPDR during orientation to acquaint them with unit expectations. A future goal is to spread FPDR across the hospital with a standardized guideline for the practice. DISCUSSION

Despite decades of research, inconsistencies remain around FPDR, largely hinging on divergent attitudes of HCPs. Ongoing beliefs that FPDR is harmful to families and patients are unsubstantiated by research; rather, synthesis of available data indicates actual and perceived benefits outweigh the risks. Nurses wishing to implement FPDR should consider several points:  Before implementing an FPDR program, assess the environment including current HCP beliefs about FPDR, interprofessional dynamics, leadership support for change, and available resources to initiate and sustain the practice.  Education about FPDR has been effective in positively shifting HCP attitudes about FPDR. Those in teaching hospitals should include resident physicians. Because resuscitation involves several disciplines, an interdisciplinary approach is advised.  Beliefs about FPDR vary by culture; therefore, understanding cultural preferences of patients, families, and other HCPs is as valuable in FPDR as in other patient care issues. Box 4 Case study Late one evening, nurses in the MICU heard a page announcing a code on the oncology unit just down the hall. Nurses from the MICU went to help because they knew they could get there quickly to initiate ACLS. As they got to the room, oncology nurses were performing chest compressions on Mrs S., a 70-year-old woman with a history of ovarian cancer who had become unresponsive and pulseless. Mrs S.’s sister was standing in the corner of the room trying to stay out of the way. The code team arrived shortly after the ICU nurses and Mrs S. regained a pulse after 10 minutes of ACLS. Mrs S. was intubated and then the code team transported her to the MICU. Mrs S.’s sister, who had remained present throughout the code, went with them. She had called Mrs S.’s husband to let him know what was going on. He had gone home but was heading back to hospital after learning of the situation. On arrival to the MICU, Mrs S. was hooked up to the ICU monitor and her vital signs were reassessed. She was hypotensive and bradycardic. Shortly thereafter she lost her pulse again. The entire code team was still present, and chest compressions and ACLS interventions resumed. Unfortunately, despite ongoing efforts, Mrs S. did not recover and resuscitation efforts were terminated. The MICU nurses had been educated about the importance of FPDR, so had allowed Mrs S.’s sister to remain in the room with her. The sister was able to say goodbye to Mrs S. and witness the efforts of the code team. Mr S. arrived 20 minutes after resuscitation efforts ceased. He was very upset, angry, and could not understand how this had happened. He wanted an explanation, because when he had been with Mrs S. earlier, everything had seemed fine. Because Mrs S.’s sister had witnessed everything, she explained to him how hard everyone had worked to try and save his wife’s life. She was able to comfort him with the fact that she had been there, and his wife was not alone.

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 Ideally, individual patient preferences about FPDR should be ascertained and documented before a resuscitation event.  Having a designated family support a person during resuscitation events is likely to benefit family and allow staff to focus on the patient.  A policy or guideline for FPDR may help support practice change and consistency.  In general, HCPs with more FPDR experience are more supportive of the practice. Consider leveraging this by having experienced HCPs share positive experiences.  Exceptions to offering FPDR should be consistent, and may include legal restrictions or situations when relatives pose a threat to the patient or HCPs. SUMMARY

Whenever possible, patient care, including practices around FPDR, should be based on evidence. Current variations in practice lead to inequities in care. It is unethical to offer the option of FPDR to some individuals and not to others based on the subjective views of the resuscitation team when there is substantial evidence to support the practice. Nurses can positively influence patients, families, and the health care team by advocating for or leading a thoughtful, consistent, evidence-based approach to FPDR. REFERENCES

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